1. How research helps people with dementia Tom Dening 24 th November 2015

2. Overview purposes of research types of research in dementia –cause –cure –care how it helps how you can help 24.11.15HWB dementia event, Nottingham

3. What’s research for? we all use research –evidence based practice –technology in everyday life taking part in research –commoner than you think, e.g. just think of all those online surveys! Loyalty cards etc. supporting research –displaying literature –thinking of research in planning services doing research –less common –led by academics but we can’t do it without help 24.11.15HWB dementia event, Nottingham

4. Dementia research Usually divided into: Cause Cure Care Let’s think about each type: which gets most money? 24.11.15HWB dementia event, Nottingham

5. Cause Includes -basic scientific research -animal models, cellular processes, protein chemistry -molecular genetics -brain imaging -classification & epidemiology 24.11.15HWB dementia event, Nottingham

6. 24.11.15HWB dementia event, Nottingham

7. Genetics What has this told us? undoubtedly, dementia has a significant inherited component small number of rare cases where Alzheimer’s disease results from a single gene some other forms of dementia, e.g. frontotemporal dementia, where single genes are important other genes that carry increased but small risks recent studies include massive numbers in order to show these tiny risks current emphasis is on epigenetics, i.e. how genes act 24.11.15HWB dementia event, Nottingham

8. How does this help us? we can give more confident advice to people with dementia & families about familial risks if we understand how the genes actually work, this may suggest new types of treatment in practice, clinical genetics advice is not useful and not required 24.11.15HWB dementia event, Nottingham

9. Classification scientists love this diagnostic and research criteria for dementia and causes of dementia are frequently refined –DSM5 and ICD11 –criteria for AD, VaD, DLB, FTD etc neurocognitive disorder v dementia 24.11.15HWB dementia event, Nottingham

10. How does this help? clearer diagnostic criteria are helpful in clinical practice: people want to know what’s wrong with them research criteria are important as want to have clearly defined groups however, in practice, many people with dementia are elderly and mixed forms of dementia are common 24.11.15HWB dementia event, Nottingham

11. Epidemiology = the study of the occurrence, transmission and control of diseases: –how common a disease is –possible risk factors –changes over time –what sort of possible interventions may help 24.11.15HWB dementia event, Nottingham

12. How does this help? We need to know how many people have dementia now, and how many are expected in the future –recent changes in UK numbers based on recent research (approx 750,000) –prevalence rate has fallen in recent years, doubtless due to better population health –numbers are essential for planning services 24.11.15HWB dementia event, Nottingham

13. Cure 24.11.15HWB dementia event, Nottingham

14. Approaches to treatment prevention existing drugs –cholinesterase inhibitors –memantine –symptom reduction non-pharmacological treatments future prospects 24.11.15HWB dementia event, Nottingham

15. Prevention 24.11.15HWB dementia event, Nottingham Action on modifiable risks, including tobacco, poor diet, physical inactivity, and alcohol, and consequent reductions in raised blood pressure, blood cholesterol, obesity, and diabetes could prevent between 3% and 20% of predicted new cases of dementia in 20 years. Lancet 2015; 383: 1805-16

16. Existing drugs cholinesterase inhibitors –donepezil, rivastigmine, galantamine –available in UK since 1997 –modest alerting effects –DOMINO-AD trial looked at effects of stopping donepezil and effects on needs for long term care 24.11.15HWB dementia event, Nottingham

17. DOMINO-AD trial: Effects of stopping donepezil and/or memantine (Howard et al, 2012) HWB dementia event, Nottingham

18. DOMINO-AD trial Risk of nursing home placement (Howard et al, 2015) 24.11.15HWB dementia event, Nottingham

19. Other medications memantine –limited utility, though very safe drugs to treat symptoms –antidepressants –antipsychotics –NB side effects! Banerjee 2009: est. 1800 excess deaths 24.11.15

20. Future prospects most interest in anti-amyloid drugs in Alzheimer’s disease e.g. solanezumab other trials include ‘repurposing’ of existing drugs, e.g. –minocycline (antibiotic) –liraglutide (drug for diabetes) many trials of other substances have been unsuccessful: –hormones, vitamins, Gingko, anti-inflammatory drugs 24.11.15HWB dementia event, Nottingham

21. 24.11.15HWB dementia event, Nottingham We commit ourselves to … the ambition to identify a cure or a disease-modifying therapy for dementia by 2025 and to increase collectively and significantly the amount of funding for dementia research to reach that goal.

22. Care: psychological and social approaches Comprises: services –diagnosis, information, advice, support –personal care –care homes –NHS and hospital care interventions –treatments for symptoms or behaviour activity and participation –exercise, arts, technology –citizenship, social inclusion, spirituality 24.11.15HWB dementia event, Nottingham

23. Research on Care increasing importance because of lack of Cure Cure by 2025 won’t help anyone living with dementia now important public contribution to setting the research agenda (James Lind-Alzheimer’s Society, 2013) a couple of examples 24.11.15HWB dementia event, Nottingham

24. 24.11.15HWB dementia event, Nottingham The final top 10 priorities 1.What are the most effective components of care that keep a person with dementia as independent as they can be at all stages of the disease in all care settings? 2.How can the best ways to care for people with dementia, including results from research findings, be effectively disseminated and implemented into care practice? 3.What is the impact of an early diagnosis of dementia and how can primary care support a more effective route to diagnosis?

25. Research on diagnosis Important findings: screening for dementia is not justified timely diagnosis is important diagnosis rates for dementia are low but have been improving different types of memory assessment service can be effective no simple test for dementia, though tests for causes of dementia becoming more sophisticated 24.11.15HWB dementia event, Nottingham

26. Care home research Important findings: increasing number of recent studies ENRICH (Enabling Research in Care Homes) – national initiative to promote CH research about 1/3 people with dementia in CH, about 80% of CH residents have dementia, also high levels of physical comorbidity NHS interface with CHs is important, e.g. admissions to hospital, relationships with GPs and other professionals (Optimal study) 24.11.15

27. How does Care research help us? we know more about what works and what doesn’t it promotes attention to good physical and mental health need for participation and equality important messages for professionals need to promote dementia awareness and skills in working with people with dementia 24.11.15HWB dementia event, Nottingham

28. How does Care research help? 2 makes a difference for people with dementia and their families opportunities to participate in and to shape research –Join Dementia Research many challenges though, especially: Who pays for what??? 24.11.15HWB dementia event, Nottingham

29. How you can help dementia awareness –Dementia Friends –Dementia Action Alliance –Dementia Friendly Communities personal involvement –own families and social circles your role as a Health & Wellbeing Board –advocate for and ask difficult questions 24.11.15HWB dementia event, Nottingham

30. Thank you tom.dening@nottingham.ac.uk tom.dening@nottingham.ac.uk 24.11.15HWB dementia event, Nottingham

31. 24.11.15HWB dementia event, Nottingham